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Wednesday, 12 November 2014

How Disabling is Down Syndrome?- REALITY CHECK~ With Monique McPherson

Have you any knowledge of Down Syndrome? Can you imagine how it feels to give birth to a child and later discover something about your child which challenges your perceptions and alters your way of life to some extent?

Its Braap is very happy to share Monique McPherson's story and especially her down to earth, practical and extremely positive attitude which helps break through the barriers of pre-conception. Thanks to Monique's input we hope you will realise that everybody has something valuable to offer provided they are given a great deal of help, patience and a huge dose of love!

Kody enjoying life

Let's begin with the basics- Apart from the obvious facial
symptoms, what other physical affects can Down Syndrome (Down's) have? In
general, heart and bowel defects are often present from birth however a high
percentage can be corrected by an operation. It’s a very individual thing and some
children have Hyper mobility (kind of like being double jointed,) poor posture,
unusual gait and back problems. Sandal toe is also quite common.

What is Sandal Toe? This
is where there is a larger gap between the big toe and other toes.

When is Down's usually diagnosed?
It can be before birth and some pregnant ladies are advised that they can be at
high risk, so tests are available. In some babies it is evident in their
features from birth and sometimes babies develop medical problems, usually
bowel problems. In Kody’s case it was missed.

At what point did you realise
that Kody had Down's? I knew
something was wrong when he was 10 months old. While I was feeding Kody one eye looked
at the other- my Mum thought it was a squint so we had him checked by the
optician and everything was fine. By 3 months babies are able to focus so Mum
checked online for possible causes and we decided to Google the signs and
symptoms of Down's. We took Kody to the doctor’s as his eyes were wandering and
hoped it could be because of the flatness at the bridge of Kody’s nose: which
can be seen in some mixed race or black children- however it is common in Down's.

What did the Doctor say?
I asked for Kody to be tested for Down's and the doctor made an appointment with
the paediatrician who said she shared my view that Kody could have Down's. I
explained to the paediatrician that he wasn’t meeting his milestones and his
eyes were crossing. The paediatrician added,’ and because of his appearance.’ I
realised then that she could actually see something so I thought he must have
Down's, but you hold on to that little bit of hope that he hasn’t. Anyway, it
took another three months to get the appointment, the blood tests, and then
waiting for the results when she finally phoned me to confirm that it was Down's.

How did you feel when it was
confirmed? That day, to be honest, I wasn’t shocked because Kody was 10
months when I first saw something and he was 15 months when I got the phone
call to confirm that he had Down's. So I had 5 months to get used to the idea
and to get my children used to the idea as well because I always thought it
best to be open with them. Telling them was for the best and they love him
unreservedly anyway.

Monique at work

What difference has it made to
your lifestyle? You focus around your kids anyway but you have to focus
a bit more around children with disabilities because you take for-granted some
things that you might not be able to do, or that might be a bit more difficult.
For instance, Kody doesn’t walk too well because of his hyper mobility. He has
visited a physiotherapist recently and had special insoles made to correct his
gait and also to try to prevent back problems in the future. He doesn’t walk
very far without getting a bit tired and he isn’t always aware of where he’s
going or why he’s going, so he might just stop, go in the wrong direction or
need to be carried because he’s tired. Kody’s 4 and being, ‘a bit of a lump,’
it can be hard to carry him but I can’t put him in a buggy all the time. He’s
going to get too old and I don’t want him in a buggy when he’s a big child-
besides his younger brother is 2 years old so it’s a bit difficult, especially
with the school run and it’s awkward when carrying them in and out of the car.

What school does Kody attend?
Kody attends a special needs school, but I will say in general children with
Down's usually do better in mainstream. In Kody’s case he also has autism. He
was diagnosed to have ASD when he was 3, and up until he was 3 I was thinking
mainstream because things have advanced so much now- people have found a
better way to educate children with Down's. They learn just as much as anybody
else but it just takes longer. Nowadays Down’s children are taught using a
different method.

What type of method?
Down’s affects your IQ but it doesn’t make you unintelligent. It doesn’t affect
your ability to think and feel, socialise, have jobs and everything we take for
granted. Everything we can do people with Down’s can do, they just need a bit
more help to get there.

Do they require more repetition?
People with Down’s tend to learn better visually. Whereas I could tell you a
lot of things and you would probably remember 90% of it, it’s not so when
people have Down’s. They usually do better if you show them something. Their
short term memory can be affected so they might need telling again a couple
more times than you and I, but eventually it will stay there and that’s their
way of learning. It’s also best to speak in short sentences and rather than
adding opinions just state the facts so it’s easy to understand. This is easy
to do in schools so it’s mainstream all the way. In Kody’s case, because of the
Autism his ability to speak was really affected. A lot of children his age with
Down’s were speaking in small sentences, using signs and being able to
communicate a bit more. Kody wasn’t speaking; he was just making occasional
sounds and gesturing to convey his needs and wants.

So the power to communicate
prevented mainstream schooling in Kody’s case? To me, communication
really is a big barrier and I know that in mainstream schools it’s going to be
difficult for him to learn at the speed required and for him to have all the
resources he needs. The way to teach Kody is completely different. He needs
movement breaks and a lot more visual stimulation. I felt that in a
mainstream school he would not get the unlimited amount he needs and there will
be occasions when they hit a brick wall and do not know what to do next.

Where there any other reasons for
your decision? I have heard of a lot of people with children who have
special needs that try a mainstream school first, teachers get to that
point where they have run out of resources or ideas and their children’s skills
aren’t up to speed, basically because they lack special needs teachers. Special needs
teachers have been doing it for years and have unlimited ideas; also there is so
much more available in a special needs school in the way of resources, which is
why Kody’s there and he’s getting everything he needs.

Does Kody cope well socially-For
example, can he handle Birthday parties or does he find this challenging?

Well, because I moved home I
don’t have a great circle of friends now as they’re all far away so it’s hard
to know.

Has he made friends in his new
school? He has a small class now and in the pre-school he attended before
there was a little boy who was very attentive towards him, but he went on to a
different school so we don’t see him anymore and we weren’t in a position to
maintain that friendship. Kody’s only been in his new school for a month so it’s
early days but the kids are lovely and the teachers are wonderful. They all
speak to Kody when he comes in and he seems really comfortable there. When he’s
older and can speak a bit I think he’ll make friends but it’s difficult while
he can’t communicate. Kody does tend to
draw people towards him and they frequently want to mother him. Friends are one of
the things I do want for Kody and we’ll cross every bridge as we come to it.

What type of support network is
available for adults whose children have down's? In my case I was quite
lucky because a Health Visitor visited me soon after Kody was diagnosed and
gave me a leaflet that directed me to the PSDS Charity. This particular charity runs a small group for mothers whose babies and toddlers have been diagnosed
with Down's. I was given numbers of the four trustees so I rang the one closest
to me. As soon as I made that phone call I felt I wasn’t alone. I spoke to Rick
Waites the first time and he made me feel completely at home. He was very
welcoming and said, ‘just come down and meet everybody else and it will be
fine. You’re not on your own.’ - And that’s the first thing you think- ‘What will
I do now? Who will I talk to? How are people going to be towards me? How do I
behave towards my child?’ You have so many questions but Rick said, ‘just come
down and have a coffee.’ Then I said ‘yes, I belong somewhere!’ and it was such
a relief I think I cried.

How was your first meeting? When I went down there it was wonderful and there was a
girl, Caroline, who asked me to sit down and wanted to know my story. Everybody
wants to know everybody else’s story- how did they find out their child had
Down's? How was it on that day? I was just drinking coffee and talking. I felt I
had somewhere to be and it was a lifeline, and I made friends with other
parents. It was relaxed and nice and I was asked about Kody’s particular
situation. When I said I had only known for a month you could feel the shock- you
could have heard a pin drop; it was unusual but I wasn’t to know, so I was
quite interested to find that out.

How do you feel about it going
undiagnosed for so long? I don’t know why it went undiagnosed but I
think in Kody’s case there were quite a lot of factors as to why it went
unnoticed. I’m certainly not bitter because we had a day of joy on the day he
was born and a lot of parents I have met had a day of stress; a day of anxiety
because they didn’t know anything about Down's. For a lot of parents it was the
first they’d ever heard about it.

So it’s not publicized enough?
No and it might have been painted in a negative light to be honest because I
heard something awful; in the nineties a really high percentage of mothers that
were told before the child was born that it had Down's went on to abort that
child. I think that if they had spent time with children with Down's or had a
child in the family it might be different because it’s not that difficult to
have a disabled child in your life and it’s really fear- and dare I add that it
might be encouraged for some of them to have an abortion.

How do you feel about your child
having a disability? When you have a child with disabilities you feel
that he’s different and you wonder what are other kids going to be like towards
your child. Kids without special needs- will they be okay and treat him as he
should be treated and things like that? At PSDS you don’t have to worry about
that because you find that everyone’s in the same boat when you get there.

What are your long term concerns?
At the moment I’m pretty confident that Kody will be well looked after because
he’s got siblings that absolutely adore him. My eldest daughter has already
told me, ‘Mum, when you die I will drop everything and take over from you. It
was very practical and reassuring and I didn’t have to ask. You don’t want to
force any of your children by saying, ‘that’s your job.’ They’re willing
because they love him so much. I don’t need to worry that Kody will have
someone to fight his corner whether I’m on this planet or not. My only concern
is what might happen if he needs any kind of emotional, physical or mental care
from care giving services. That’s always the worry because of the things we
hear on the radio about care homes etc. I know we can’t consider them all the
same but my concern is that my son might be the unlucky one and end up with
somebody that doesn’t care enough, who is in the wrong job. That’s the only
thing I worry about. I don’t think that will happen as we’re a strong family
and we’ll help him as much as we can.

What do you think about Kody’s
long term prospects, jobs for example? There are so many magazines with
case stories in them that highlight the success of people with Down's. You don’t
have to be involved with Down’s to join the association and there’s one
particular story I read about concerning a gentleman who has been a mechanic
for ages because he was given the opportunity to learn. It was what he wanted
to do so thank God for him being given the help he needed to get the right
qualification. He turned out to be the most reliable member of staff they’ve
got because he wants his job. He loves to do his job, he’s good at routine and he’s
always on time. It’s nice to see when that happens and there’s one man in America
who owns his own successful restaurant.

Let’s finish with a thought- Do
you think that the level of dedication and attention to detail shown by adults with Down's is like a
characteristic in the same way as the physical signs? I can’t say because
everyone’s individual and children go through the stages of stroppy teenager
and so on but it might be worth researching.

A huge Thank You to Monique for taking the time to speak about her experience with Kody in such an honest way and I hope, like me, you found it enlightening.

MIX CLOUD

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JAZ MCKENZIE ~ THE WORD MAGICIAN!
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